Made of Gray

Hodgepodge of Info

Holly D Gray6 Comments
Not a whole lot has happened in the last few days. We are falling into a pattern with medications and TPN. I've resumed my role as "fight for the right supplies momma." So far I haven't had to endure too many hard battles, but having something brought to our house or picked up EVERYday is getting tiresome. Hopefully we will have everything in line soon.
JANsummersvest4
Caleigh has been in a really good mood the past few days. She's been laughing more and making more sounds. Her head control is more stable. She has also been lifting her belly off the ground while laying on her tummy. She seems overall stronger. I think the TPN is giving her the nutrients that she was missing through her g-button feeds. The malabsorbtion of her intestines was more than we thought. We moved her up to full strength Elecare and kept her at 5ml an hour. Since starting trophic feedings Caleigh's retching and coughing has returned. She vomits at least once a day. I guess that fundoplacation is all but there anymore. Just more indication that things aren't moving through like they should.
JANCVL2
So here's a look at Caleigh central line. This was actually before we switched our cleaning protocol. Caleigh was having a strong reaction to the chloraprep that we were cleaning her skin with. She got red blisters all over. It wasn't pretty. So now we are cleaning with betadine and alcohol and her skin is looking very nice. Her sensitive skin is just getting more and more reactive to things. This last hospital stay Caleigh had a reaction to the huggies diapers that they have. We just need to be careful with her exposures, but I don't see this getting better anytime soon.
JANCVL
We have been playing around with different wraps and options for keeping Caleigh's line secure. She's a year older and a year wiser when it comes to pulling on her lines. We've tried ace bandages with pretty good results. We wrap Caleigh's chest and everything stays in place. This won't be a great choice in the summer though.
JANsummersvest
When we went back to the hospital last week I started asking around about a special vest for central lines. This is apparently a secret invention that only the oncology floor knows about. I was tipped off by a nurse that the hospital actually kept them in stock and they could bill our insurance for it ($150). Apparently, the child of the inventor was an actual patient in our hospital and that's how they had a connection. So 10 minutes before we walked out the doors, our nurse brought Caleigh her very own Summer's Lifeguard vest. We really like it and it has worked great. In all fairness the surgeon put so many stitches in the new line that I really don't think it is going anywhere. The vest is a wonderful invention and we really try to use it at least when we are out of the house.
JANsummersvest2
And at last....Check out our morning at Barnes and Noble with Kendall and Jocelyn. Of course I forgot my camera, but Jocelyn puts my sentiments into words about the whole adventure so I won't bore you with a repeat.

Here's a little teaser for you.....I've made the calls to get nursing help for Caleigh. Anyone that knows me, knows that this is a HUGE step. I'm hoping it is a positive step. It will take a few weeks to get the ball rolling. I'll have more information soon.
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